Do I need surgery

[cthomas]

Hi
Can someone tell me if narrowing will always need surgery this has been discovered on my last xray and my appointment to see doctor not until Sept so am a bit worried about this now could this be treated with medication?

 

[Creepy Lurker]

Hi
Can someone tell me if narrowing will always need surgery this has been discovered on my last xray and my appointment to see doctor not until Sept so am a bit worried about this now could this be treated with medication?

It depends really.

Sometimes the narrowing is just down to inflammation, sometimes it's scar tissue. Inflammation can be sorted with medication whereas scar tissue needs to be treated differently.

I had scar tissue narrowing in the transverse colon baloon dilatated to avoid surgery. It worked well, but isn't an option in the small intestine.

 

[cthomas]

Thanks for your reply, lad to know someone can help!

I had a letter today following the xrays saying that the crohns was "involving about 10cm of the terminal ileum with thickened bowel walls, however no dilated loop to show significant obstruction" they have said I need an earlier appointment to update and try Mercaptopurine. What is this?? I know my Crohns from this may sound mild however my symptoms are far from. I dont seem to get a break from stomach aches each day the same battle then the fainting and fever. Can you advise on the new medication i'm running out of steam now and so worn out with things.

Thanks guys x

 

[bruscar]

Hey there cthomas,

I suppose you have tried the softer style diets etc, if not get in touch with a dietician, this can often give your bowel a rest and you too, of course.

Surgery sounds bad to you i think, but i have been there and stayed awake for many nights before i had my first couple.....without any need to. Honestly these guys know what they are doing and have done whatever they are gonna do to you thousands of times before........so don't worry yourself if it comes to that, it wont do you any good being all tensed up.

As regards whether or not narrowing needs surgery.........every single one of us is completely different, so just you let the doc worry about as much as you can.

Good health to you my friend, and chin up.

Bruscar

 

[daisy_dueller]

IF you do need surgery, which you very well may not, don't be worried. I was SO worried when I had mine, especially since the recovery seemed to take FOREVER...but I'm 9 months out of surgery now, and it has literally changed my life. SO glad I had it done, not that I had any choice, it was an emergency surgery...

 

[kello82]

pretty much agree with all that has been said, cthomas

i had a stricture in my rectum and it was always manageable by self-dilation. the first few times the surgeon did if for me in the OR (nothing surgical, basically they lube up a metal stick and put it in your butt ) just to make sure all was ok, and since then ive done it myself every few days at home.
so depending on where it is, you may be able to manage it yourself, or a surgeon may be able to manage it as creepy noted, with a balloon type dilation.

obviously, if you stop pooing and are vomiting and severely cramped...go to the doctor right away. sometimes narrowings like that can close off completely or get blocked up....but as long as you are eating and passing stool ok, it *shouldnt* be too big a problem in my opin.

 

[imisspopcorn]

I think most surgeons try to be conservative and put off surgery as long as possible. I was told by my GI that you can still pass food through a narrow space the diameter of spagetti?? Obviously it depends on where the narrowing is and what your eating. Usually if they see a dialated loop of bowel it signals obstruction. I had my disease in the same location as yours for approx 11 years. I just had my first bowel resection 1 year ago. Hopefully the more aggressive meds will help you.

 

[cthomas]

Update

Hi All

Thanks for the responses. I have my next apt in 2 weeks time so i'm hopeing the new midication will work not really wanting surgery at the moment. the asacol I am on at the moment worked for about 3 months now i'm back to pain everyday so the next couple of weeks cant go quick enough has anyone been on the medication they are going to try with me?
How is everyone else doing anyway?

 

[Jacob_Miller12]

I have been through a lot. I have had 3 surgerys and to tell you the truth no it does not! There is one more alternative. Ask you doctor if you can get a balloon fixture. I do not know the name of it but, what they do is everything like a colonoscopy, except its helping you in the long run! What ever narrows you may have that balloon will take it and stretch is so it go's back to normal size. It does not always work but for some it does! I hope this helped im glad to have tried anyways! Good Luck!

-Miller-

 

[cthomas]

Narrowing

I have been through a lot. I have had 3 surgerys and to tell you the truth no it does not! There is one more alternative. Ask you doctor if you can get a balloon fixture. I do not know the name of it but, what they do is everything like a colonoscopy, except its helping you in the long run! What ever narrows you may have that balloon will take it and stretch is so it go's back to normal size. It does not always work but for some it does! I hope this helped im glad to have tried anyways! Good Luck!

-Miller-

Thanks Jacob I had my appointment a few weeks ago and apparently they cannot widen the narrowed part I was so shocked with the pictures from the xrays its so narrow - I suppose everyone has already seen what its like but for me I cannot believe anything can pass through. They are trying me on this Mercaptopurine not sure what this does cant find much on the internet. I need blood test every week etc. He has also said as soon as I vomit alongside the pain I must go to er. I now there is narrowng and i have vomited many time previous to today with the pain but why does he say this now??? I'm so scared of getting my pains back I cant handle it. getting really fed up with everything now. any advice?? Thanks for support guys xxxx

 

[kello82]

agreed with shantel...i think the reason he wants you to be careful about vomiting is thst it can be a sign that your narrowed part has become blocked up.

definitly if you are throwing up, you might have bad cramps as your body is trying to push food through the blocked space and no stool coming out are telltale signs that theres an issue.

be careful and good luck!!

 

[Hana]

I am no doctor - but he may be telling you this because vomiting is a sign of blockage. When you have a narrowing that is that severe - and your stool gets backed up - you vomit. It's your body's way of saying "nope - too full here already - no more food please!". It puts you at risk for a perforation *I believe* - someone else who has had big time narrowing correct me if I'm wrong. So, if you vomit - they probably want to take a look and see if you have a blockage. I'd listen to them.

Sorry you are going through a rough spot! Surgery is not the end of the world buddy - sometimes it can mean all the difference in your quality of life.

Shantel did you only have one surgery since you were diagnosed? My husband has Chron's and his doctor just scheduled him for a surgery because he said there is nothing else he can do for him. He is not vomiting though...and he is in a lot of pain, and some nights barely gets any sleep. I just see this surgery as the beginning of an end (a painful one), because the ******* will keep coming back and they'll keep cutting. I keep thinking that maybe he can delay this a little longer..but what do I know..I don't feel the physical pain...and I just don't know what to do to help.

 

[Hana]

Hi Hana - and welcome to the forum! YES...I have been fortunate enough to only require 1 surgery so far, but have come close to an additional one about 6 or so years ago if memory serves me right. I'm going to speak frankly, and hopefully will not offend anyone - but this is my take on this disease. If you have had a simple flare that you were able to get under control say, with a round of steroids and the 5 ASA's seem to be keeping you under control - GREAT - lucky you! BUT...if you keep having flares over and over again - or you have just been diagnosed after *years* of active disease which has plundered a specific area or two of your gut - that kind of thing really needs to be handled with much more powerful drugs - or your quality of life is not going to be so great. I don't know the history with your husband. He may have been dealing with this undiagnosed for a while and have a spot so bad that it just NEEDS to come out for him to get a fresh start. That is EXACTLY what happened to me (search for my story under "your story" and you'll see - I've had it most of my life). When an area gets sooo diseased, especially if it is at risk for perforating - you just have to take that out. Now, yes - my disease comes back where I had my resection done - this is normal. I am just very aware of my body and how it behaves after "listening" to it for so long, and know when I have to pull the trigger and step it up with a different med or method to get it back under control.

OK - another long post from me - sorry guys!!! Hana - feel free to PM me anytime with questions!

Thank you SOOO much for replying so quickly. I will carry on with you through PMs because I don't want to bore everyone else.

 

[cthomas]

Update

Hi Guys
Got my new med's on wednesay only one 50mg tablet per day now of mercaptopurine they did mention side effects and i have blood tests each week now for a while but I have really bad joint pain mainly knees and elbows very sore throat and just generally dont feel well. has anyone else experienced this on this medication? I am going to give it a while not sure if this is just coinsidence at the moment would these side effects happen so quick? xx

 

[cthomas]

Hi Guys
Got my new med's on wednesay only one 50mg tablet per day now of mercaptopurine they did mention side effects and i have blood tests each week now for a while but I have really bad joint pain mainly knees and elbows very sore throat and just generally dont feel well. has anyone else experienced this on this medication? I am going to give it a while not sure if this is just coinsidence at the moment would these side effects happen so quick? xx

Can anyone please help with these side effects today joint pains seem to have gone for now but the sore throat, vomiting and generally feeling unwell is alot worst?

 

[cthomas]

Update

Well after all the aches and pains finally went to er found out this was pancreitis caused by the medication so i'm off the mercaptopurine now and back on to the Asacol so once again have the stomach ache most days getting pretty fed up of this now my next appointment not till Feb so its a case of get on with it I think. Why does it feel like they dont care!!!!!!!! Hope everyone is ok. xxxx

 

[Guest]

aw sorry to hear that, cthomas i take it the pancreatitis will resolve now you're off the drug? i've never had that drug or anything like it, so i know nothing about the side effects etc.

february does seem a long time to wait until they see you again.. is there no way they can bring the appointment forward?

regarding your earlier posts about surgery, sorry i missed them, but just wanted to say i've had numerous abso operations many years ago, and although no-one likes the prospect of surgery, sometimes it really does make you wish you'd done it ages ago. i think when your quality of life falls to the point where you don't want to go on like this anymore, surgery is certainly worth considering seriously, particularly if the docs think it will make a big difference to how you feel.

 

[imisspopcorn]

I'm sorry your still having so much pain. I don't necessarily believe that they don't care...even though it feels that way sometimes....I think sometimes they just don't quite know what to do. I was pretty much in your position last summer(2008). We tried every med, and then I saw a surgeon. I was having a good day when I went to the surgeon, so of course he wasn't going to operate. If only he could have seen me vomiting 20 times a day....It took three hospitalizations before I finally had the resection. 6 inches of terminal ileum removed later. The surgeon said it was good it came out because it was beyond treatment. ????

My advice is, if you start back up with the vomiting, go to the ER again. Maybe your primary doc can give you something for the pain as well... I really hope you can get some relief soon. I know the constant pain is so depressing. Please don't give up. Things will get better.

 

[cthomas]

Thank you Your right they do care I know but they dont seem to be able to help most of the time. I am just really fed up of it at the moment. Hopefully in Feb they will be able to try something else he said last imte I spoke to him he would like to move my apt forward but was too busy!!!! They have mention steroids do you have any experience of these?x

 

[imisspopcorn]

Tons of experience with steroids.....Most crohnies do.....I'm surprised you haven't been on them???? What would you like to know??

I have a love hate relationship with Prednisone.....

 

[Crohn's 35]

Well after all the aches and pains finally went to er found out this was pancreitis caused by the medication so i'm off the mercaptopurine now and back on to the Asacol so once again have the stomach ache most days getting pretty fed up of this now my next appointment not till Feb so its a case of get on with it I think. Why does it feel like they dont care!!!!!!!! Hope everyone is ok. xxxx

Hi there, wish I was here to read these posts. I was on Mercapturine last Dec and only on a few days and it was affecting my liver! I was sooooooo sick and I went off it myself, cause our Canadian doctors dont call you , especially near the holidays. I was on painkillers for the pain of that. It is an immunosuppressant and he knows I cant have that, Imuran, and another similar, they afftect me large. I know you are not crazy about surgery ( who is). I had surgery when I kept narrowing and got so blocked I was the hospital in more that out. My first surgery was laproscopic , in the Ileum. I have about 2ft in total out now, and glad I had my first one, couldnt take the pain anymore. Worse than having a baby au Naturel! Let us know what the outcome is.